State gave her a home - and then locked her out

A young woman named Kara Anderson suffers from autism, mental retardation, an inability to speak and a seizure disorder that wracks her body and makes her weak.

She also suffers from a bureaucratic runaround.

"It's beyond me how the state can treat a child like this," says Kara's mother, Susan Anderson. She lives in Hillsborough.

Kara, 18, was granted admission to the Hunterdon Developmental Center in Clinton more than a month ago -- but then the state immediately made it impossible for her to go there.

To Susan and Paul, Kara's father, the placement at Hunterdon was, while not perfect, the best available.

"She needed someplace," says Susan. Kara was attending Bancroft NeuroHealth, a private residential school in Haddonfield, but officials there said she had to leave because of the "complexity" of her medical conditions. And because Kara had "no peer group" -- no other child with the same problems.

"Of course, they knew that from the beginning," says Susan.

So the Andersons found the Hunterdon center, a public facility. It would take her. But there was a catch, announced only after the young woman was admitted. The placement was made contingent on taking Kara off a medication, Frisium, that the Andersons say controlled her seizures for the first time in her life.

Frisium, a Canadian drug, is not approved by the U.S. Food and Drug Administration. The Epilepsy Foundation of America lists it as a treatment for seizures, but notes its lack of approval in this country.

"I can't take her off Frisium," says Susan. "What mother would do that? What mother would take a child off what amounts to a lifesaving drug?"

Susan calls it lifesaving because it is the only medication that reduces the frequency of Kara's seizures. She had so many, often dozens a day, that she had to wear a brace with handles so school employees could walk with her, holding her, to keep Kara from falling when she had an episode.

"She can do serious damage to herself because she drops straight down to the floor when she has a seizure," says Susan.

Kara's doctor prescribes Frisium. It can be purchased from pharmacies in Canada and other countries that approve its use. Nurses at Bancroft give it to Kara.

The Andersons' dealings with the state and other agencies have angered and frustrated them. Finding Bancroft was difficult enough. Then that school decided it could not deal with Kara's medical problems after the child contracted pneumonia. Her mother thinks the brace the school used was too tight and affected her lung function.

"These agencies are always thinking of their exposure to liability," says Susan Anderson.

Bancroft's officials have repeatedly set deadlines for Kara's removal, but the Andersons had a difficult time finding another placement.

Then came the chance to place Kara at Hunterdon. Just weeks after the center said it would admit the young woman, a state official sent the Andersons a letter saying she could come only if she stopped taking Frisium.

On July 11, a Bancroft vice president wrote to Jennifer Velez, the state human services commissioner, pleading with her to let Kara go to Hunterdon and continue using Frisium. So far, there has been no answer.

"You'd think we would at least get the courtesy of a reply," says Susan.

Pam Ronan, a spokeswoman for Velez, says the department is looking for another placement for Kara. That's what's taking up the time.

"We have to be very concerned about administering a drug that the FDA has not approved," says Ronan. "Our staff needs to follow the law." Among other consequences, Ronan says, the state could lose federal funding if it violated FDA procedures. She says Kara cannot go to Hunterdon and have the drug. Private facilities, like Bancroft, don't face such restrictions, she says.

"How can they ask us to do that?" wonders Susan Anderson.

Susan sits in Kara's room and talks about her daughter. Talks about how, in many ways, Kara never got beyond babyhood. Never spoke. She often hurt herself out of the frustration of the life she leads. Scratched herself until she bled.

Says Kara's mother, "She needs help far beyond what we can provide at home."

This room is still a little girl's room. Frilly curtains and filled with stuffed animals and old drawings from young friends. But Kara doesn't live in this room anymore.